Life is like a movie-since there aren’t any commercial breaks, you have to get up and go to the bathroom in the middle of it.
Garry Trudeau

A select few of us have legs that don’t work but a bladder that still does. I assume that we constitute a minority of wheelchair users in that way (although not so uncommon in the MS world). Because I have this versatile wheelchair that climbs curbs and stairs, the limiting factor of where I can go and how long I can stay is often bathroom access. My friends appreciate the incredible mobility that I have with my iBOT wheelchair, and often encourage me with phrases like, “Oh, you can get in there with your wheelchair, no problem.” But they don’t think about the bathroom. I, on the other hand, spend considerable time thinking about, wondering about, and strategizing about bathrooms.

New, public buildings are not the problem- airports, hospitals, shopping malls. The ones that make life interesting for me are the old buildings and the private homes.

Our favorite pub in downtown Portland is called Ri Ra. Up until a year or so ago, I could still manage to use bathrooms that required me to get up out of my scooter or wheelchair, struggle through a bathroom door, and use the toilet. When I could no longer do that, Ri Ra just wasn’t working for me anymore. Too bad, because it’s a fun spot to meet friends after work and a welcoming space to bring out-of-town guests for a cold brew.

So, as I’m driven to do by necessity sometimes, I became creative. There is a nice hotel directly across the (busy) street from Ri Ra. Now, anytime I’m enjoying my favorite pub and need to use the toilet, I put on my coat and gloves (if it is winter) and cross the street to the hotel. I carry myself as if I’m a guest while I zip by the check-in desk. Sometimes I even help myself to one of their complimentary chocolate chip cookies. They greet me with a “good evening sir,” or similar. I go around the corner to the lobby bathroom, use it, and then leave again. I can’t tell if the folks behind the desk are naïve or compassionate.  Who’s fooling whom anyway? 

John and Ann are good friends. Kim and I often visit their home to watch a Red Sox or Patriots game together. They have three steps up from their garage to their entryway, but this is no problem for the iBOT. Their first-story bathroom is accessed from a narrow hallway. I just can’t quite make the corner into that bathroom. Until a few months ago I could manage to get out of my chair and slither on over to the toilet, but no more. So once again, I became creative.

The tightest turning radius in my iBOT wheelchair is actually in the balance mode. So at John and Ann’s house I now go into balance mode in the hallway, make my way into the bathroom, go back down into standard mode, transfer to the toilet, transfer back to the wheelchair, go back up into balance mode, exit the bathroom, and then go back down into standard mode. Piece of cake. It sounds like a lot of hoops to jump through in order to use the bathroom, but as a disabled person you either learn the patience required for these types of work-around plans, or you sit home all day.

Here’s another problem I encounter sometimes — low toilets. I visited some friends in Boston recently. Their condo was quite roomy. I could even get into the bathroom without going up into balance mode. The problem was, once I got situated on their low-rise toilet, it became very difficult to get back up. The vanity was to my right, so I had something to use as leverage for that half of my body.  There was nothing, however, to support the left side of my body.  I found myself stuck on their toilet for about ten minutes. I was on the verge having to call for help, something that personal vanity discourages. But, at the last minute I executed a successful, all-or-nothing lunge for my chair.

When I had my CCSVI procedure in Brooklyn in March, we met friends at a Manhattan restaurant for dinner. Kim and I arrived at the restaurant before the other six guests. After a rush hour drive from Brooklyn to Manhattan, I needed to empty my bladder. Unfortunately, the restaurant bathroom was inaccessible. I asked the maitre d’ if there was a handicapped bathroom anywhere nearby, and there wasn’t. Kim and I surveyed the situation in the restaurant bathroom a second time, and devised a strategy. Long story short- I held myself up by grabbing whatever I could (doorknob, countertop, Kim’s shoulder) and Kim moved my feet for me one at a time, the 10 steps or so from the door to the toilet and back again. I nearly ended up sprawled on the floor a couple of times, but Kim propped me up (and I only outweigh her by 80 lbs). I refrained from drinking anything with dinner, as I didn’t want to wrestle with that bathroom again.

Last summer I was speaking with a friend of mine about my bathroom accessibility issues. She asked the question, “Why don’t you just use a catheter and a bag?” One day I may have to do that, I explained to her, but as long as my bladder is still working I feel obligated to use it. So, for the foreseeable future, I’ll continue to make the following request whenever we consider going someplace for the first time:

“Tell me about the bathroom.”

Despite my illness, and the challenges it presents, I still find moments of supreme joy in life. Sometimes I share these with my lovely wife, my family, friends, or even people I stumble upon in the community. Other times, I’m completely by myself.

I’m a person who thrives on occasional solitude: sitting by the ocean and watching the surface of the water sparkle from the setting sun; positioned on an old woods road, rifle in hand, senses piqued, waiting for a whitetail deer to reveal himself; reclined by the warm fireplace in my home, reading a book that puts into words some truth that had previously eluded me.

My handcycle is one of the best purchases I’ve ever made.  It has allowed me to enjoy exercise year round (I set it up on a trainer in the winter months). While doing my body some small amount of good, I’m improving the welfare of my mind and soul immeasurably. I feel alive and even temporarily healthy when I propel myself down a road or a path, completely under my own power, alone in my own little world.

When I began using the handcycle I could manage as many as 18 miles on a single ride. If my body had been stable, instead of getting worse due to MS, I’m sure I could’ve improved to at least marathon distance. But, instead, each successive year I’ve had to shorten my rides. Last summer I could only manage a couple of miles a day. 

Transferring from the handcycle to my wheelchair at the end of a ride is a feat requiring flexibility, dexterity, and strength- three characteristics I no longer possess. On more than one occasion I’ve ended up flat on my back in the driveway. When that happened it took the combined strength of both Zach and Kim, a bit of my engineering knowledge, some scrap lumber from the shed, and a roll of duct tape to get me propped up into my wheelchair again.

It’s still worth it. With MS, you have to pick your fights. I’m going to fight to maintain my handcycling for as long as I can.

On some of my rides I’ve had the forethought to bring along a camera. Here is a link to some pictures I’ve taken from my handcycle. (Once you get to the photo album, just click on the first picture to enlarge it, then use the arrow keys above the picture to move through the album).

Come on, spring.  I’m ready.